Was I wrong? What would you do?

ButterflyWings

Apologies for cross-posting. Listing in CG forum also, to get as much feedback as possible.

We are getting to a really gray area that I didn't see coming. Currently at a plateau...6d and holding for a while. The daily grind with his disease at this point definitely isn't easy but isn't terrible - for DH or me -  yet either. Some of the earlier days were actually much harder in different ways - like mid-stages omg.

I am prepared to not bat an eye with letting my DH's DNR wishes prevail. Cardiac arrest, stroke, any kind of traumatic injury or fast moving terminal anything, we will not be taking extraordinary measures to prolong his misery. That is something I know would/will be extremely sad (heartbreaking, literally) but I am clear that it is a much kinder way to go than having to ride the AD train to its bitter end in stage 7. 

Since there is no cure for AD and will not be in his lifetime, it is such a cruelly debilitating disease, and he lived a long accomplished life I definitely believe like many LOs here, that it would be a blessing if DH is to stroke out or die of something else. That could happen but is currently not on the radar since he is in great physical health for his age.  

Today, I saved his life. In a split second without even realizing it. 99.9% sure I would do it again, but that is the gray area. We were eating lunch and all of a sudden DH wasn't breathing. He either laughed or coughed, or just breathed in at the wrong time, but seemed to inhale (aspirate) a mouthful of food before he could swallow it. I realized it was stuck and he couldn't speak or breathe. I almost passed out myself realizing how serious things were. 

In a terrifying 2-3 seconds I realized he was about to choke (to death) and jumped up quickly, grabbed him from behind and did a really sloppy Heimlich maneuver (CPR, First Aid and AED certified annually for years but its been a while). It worked! DH thought I was crazy but started coughing (and breathing again thank goodness!) I apologized over and over for grabbing and manhandling him that way. Hugging and kissing him. I was SO relieved, but thought about it later. 

His lead nurse asked me recently to start thinking about what I will do when hospice can't (or won't) intervene -- and considering an ER override would just be prolonging the inevitable. Like, to think about when he is actively dying and (try) preparing to accept end of life, is what I think she was suggesting. Weird timing as he hasn't aspirated anything before today. 

I have responded to many posts here that I would not try to prolong a LOs "life" to extend their suffering from this horrible disease. Quality of life is a one way downward spiral here, and riding it to the bitter end is a terrible thing for any of our loved ones to endure. When it gets to the point of choosing surgeries or other extreme interventions to delay the inevitable, that is a no. His wishes and mine. However, DH isn't actively dying yet...but suddenly today, he was in minutes of being gone. I literally saved his life without thinking and was terrified it wouldn't work. 

Was I wrong? What would you do?

Pat6177

BW, you are trained to respond to an emergency and that is what you did and you did it well. That is different from an end of life decision. Had I been in your shoes, I think I would have done the same thing. My DH once said that, when having to make a major choice, he would ask himself if he would regret the decision if he choose yes or if he choose no. Again, if I was in your situation, I would regret not saving him. I think that choking to death on a piece of food would be a difficult way to die as compared to a situation where the dying person can be given medicines to ease the anxiety and possible pain that often accompanies death. My mother had lung cancer and the decision had to be made to take her off the breathing machine and let her go. She was well medicated until she passed. I was ok with that. But I don’t think I would be able to watch my DH choke to death. Just my opinion.  It thank you for sharing this, it’s something to think about and I’ll be following this thread to see what others say.

Lynne D

I understand your stance on not wanting to prolong the suffering, and would have done exactly the same thing you did.

LeBret

I think, unquestionably, you did the right thing -- both for yourself and your husband. It would take an awfully hard heart to stand by and let anyone you loved choke to death before your eyes. And while both my wife and myself have DNRs drawn-up, I have declined to sign one for her daycare center. I believe that the DNR is best reserved for a catastrophic event such as a heart attack or stroke in which there is significant, irreparable, damage done. I mean to say that after the choking incident your DH was the same as before you intervened. You did what was necessary and humane. You intervened in an act of fate, not in a moment of "nature taking its course". Well done.

Mint

Butterfly, 

I don’t want to prolong my mom’s life either when nature takes it’s course.  Think I would have reacted in same way you did though if she was choking on food.  

June45

DW, I also have a DNR for my husband but you did the right thing in this particular case.  If you had not saved his life, I think that you would have been far more tormented by the question, "Should I have saved him?"

toolbeltexpert

I guess I have had all the thoughts you have had. I have tried to imagine if my dw has having a stroke, would I call 911? But I probably would, I think I would have done the same as you Butterfly wings.  You did good.

Lills

I agree with the others 100%.  I would have done the same thing.

ImMaggieMae

BW, I would have done exactly the same thing. The choking was an accident, not an end of life event. Of course you would save him. You did the right thing.

Ed1937

BW, you did what any of us would have done in those circumstances. Allowing someone, especially a LO, to choke to death is much different from letting a stroke or heart attack take them. Well done.

Beachfan

BW,

You were not wrong; you did the right thing.  An emergency life threatening event is different from an end-of-life decision due to terminal illness, heart attack, or stroke. 

 I have a DNR, for the future.  (I am presently 75 and in excellent physical health.)  I wear a medical bracelet due to an airway issue.  About 8 years ago, prior to the discovery of the airway issue, on vacation in the Dominican Republic, with my daughter and son-in-law along, I choked on a piece of steak at dinner.  DH was oblivious as I stood up in absolute panic, struggled to breathe, choked, and knew I was in deep trouble.  My son-in-law sprang into action, performed the Heimlich and without a doubt, saved my life.  DH never batted an eye.  I joke now that had my son-in-law honored the DNR at the time, they would all be rich by way of inheritance. On the other hand, it was a scary situation and, in my opinion, one in which a DNR should never be honored.  You did well!  

Joydean

Butterfly, I totally agree with what everyone else has told you. You my friend did the right thing!

Pam BH

BW, you did the right thing.  I have the same beliefs as you about DNR but DH chokes now at just about every meal. Sometimes it's bad enough to need the Heimlich and I immediately respond. It's strange but I'd never thought twice about it until I read your post. I know I would have been tormented if I'd done nothing. Come to think of it, DH would have been tormented too if he stopped choking, was all right, and realized I'd done nothing. LeBret said it best - your DH was the same afterwards.

Jo C.

You did the right thing. Having him suddenly choke to death on food when preventable was a sudden, abrupt, temporary thing - Heimlich was not an extraordinary measure.  We are not intentionally killing our LOs and a Hospice nurse would have taken the same action.

This does beg however, careful watching to see what his swallowing is like.   It may be that changes in diet may have to be made and if it is appropriate, if changes in swallowing are seen, it may be helpful to have a swallow eval.   Cannot recall if he is on Hospice or not; if so, then an eval would probably not be part of their approach, but adjusting diet to accommodate his changes would be.

J.

Vitruvius

I strongly, strongly agree that you did the right thing.

I do not want to prolong DW's suffering either but I can't imagine not doing the same thing as you when you have no time to think.  It's sort of like Pascal's Wager, the consequences of taking immediate, instinctive action were really neutral, your DH is saved and is in exactly the same health as he was 5 minutes prior.  The consequences of NOT taking immediate, instinctive action are...well you know.

ButterflyWings

My dear forum mates - To everyone here, thank you so much for your responses. Your reassurances actually have brought me to tears this morning.   

I know the wisdom from this community is the best, bar none, and am so appreciative of all feedback here even if you had said the opposite. That it is unanimous says a lot. I am breathing easier about trusting my instincts in that split-second, unexpected event. As they say, dementia caregiving is not for sissies. Waiting to see what challenge arises next and hoping at least it won't be a life or death decision. Thank you again for sharing your thoughts. Priceless.

Gig Harbor

I would have done that in the same way I would rescue my husband if he was drowning. Now if he were to get pneumonia and have respiratory difficulties with that I would not consider intubation. There is rescue and there is prolonging life by meds or oxygen. Two different things.

markus8174

You did exactly what you should have. True or not you would have spent the rest of your life wondering is your loved one spent his last minutes in life terrified and desperate for help.              I faced a similar, but more prolonged situating on my DW's last days at home.  She had been combative about personal care for over 36 hours. Thats 36hours in the same incontinence wear. I suspected she had a UTI before, but I couldn't get a specimen. Her last night at home I sat by her side and held her hand when she'd let me. By morning she had a fever and was responding less and less to my voice, but still was calling out for help and complaining of pain. I chickened out and called 911. Urosepsis and pneumonia. She may have died from it, or perhaps not. I just knew she was in acute misery and that wasn't what the DNR decision was meant to prolong. 2 years in long term care and she continues down the path of AD. She still has days where she laughs and jokes, although they are rarer every month.  I would have stolen those from her if I hadn't called 911.

DrinaJGB

I would have done the exact same thing in a heartbeat.